How cancer changes caregivers

Deborah Cornwall is a cancer survivor and has over 20 years of experience as a leadership volunteer for the American Cancer Society at national, regional and local levels. She is also the author of Things I Wish I’d Known: Cancer Caregiv...

Being a caregiver changes your life

You may feel that it goes without saying that caring for a cancer patient changes your life. Yet the breadth and magnitude of the changes is something that cannot be underestimated. Through interviews with 86 caregivers and many more informal conversations with caregivers, I found the following profound changes that resulted from their caregiving experiences.

Appreciation of inner strength

One of the most profound experiences for many caregivers is that they discovered their true inner strength. The greater the intensity of the caregiving experience, the more self-affirming they found it, despite their anxieties along the way. They describe themselves as stronger, wiser and more self-confident.

The ability to maintain hope

Caregiving toughened them, deepened their inner resources and demonstrated their stamina beyond their own expectations. They discovered that they could sustain the level of effort required and navigate the ever-changing challenges while maintaining hope. They learned to partner with the various specialists (surgeons, oncologists, radiologists, pathologists, technicians, social workers and more) — complete strangers whose skills and commitment were essential to their abilities to sustain hope. And they found new ways to maintain fragments of normalcy from their lives before cancer.

Patience, compassion and giving back

Many caregivers found that their experiences increased their compassion for those facing similar challenges. Most said that now they savor every moment, are more sympathetic to others’ feelings and needs, and are eager to make the caregiving trip a little easier for others. Here are a few examples:

Annie’s husband admitted, “I’d been a very impatient man. I was probably like a charging bull. But I learned to slow down and I learned to have some sympathy — to put myself in other people’s moccasins for a little while and to think how I’d like to be treated if I was in their shoes.” He hopes in the future to apply his caregiving-acquired paramedic skills to help other caregivers.

Susan’s daughters and Jen P.’s husband have been raising money and awareness to fight brain tumors. “We’ve turned this horrible thing that’s affected us into a charity to help others in the local area," explains Jen's husband. "A lot of our healing has been helping others.”

Michael L.’s mom has channeled her gratitude for Michael’s survival into helping others. “Michael is a sign of hope for others. . . . It’s important to show parents that other parents understand what they’re going through.” Jeff’s mother celebrates her son’s survival through advocacy, educating legislators about the issues that matter to cancer patients and their families.

For all, it was about illuminating caregiving’s uncertain path to make it easier for new caregivers.

Rediscovering normalcy

The return to normal life has posed challenges for many caregivers because the adrenaline rush was over. Yet it also generates commitment to wringing every ounce of joy out of their lives. Caregivers say they now cherish every day, given the realization that it could all disappear in a moment. They enjoy a second chance with their loved ones as they recover their own personal equilibrium. They “don’t’ sweat the small stuff” as they did in life before cancer and they set priorities differently.

Embracing what matters

Caregiving has helped people confront what really matters. They leave the isolation of the cancer experience behind and re-engage with their families and their communities. They greet life with gusto. They travel and read and socialize, sometimes far more than in the past. And they willingly share their experiences, convinced that their lives have been enriched regardless of the outcome of their caregiving.

Celebrate instead of mourn losses

Their celebration of life doesn’t mean that they don't mourn their losses, but rather that they are committed to appreciating what they have. For Carl, who survived cancer, and his wife, it means returning to the swimming they both enjoy, despite Carl’s loss of one leg to bone cancer. For Tim’s wife, it means remarrying seven years after his death: “I never thought I’d fall in love again. It doesn’t mean that I’ll ever stop loving Tim, but it means I can still live a full life.”

Caregiving is ultimately a gift

Cancer caregiving is something that falls into your lap, with a punch. Once the smoke of the battle has cleared, most caregivers turn the experience into something positive, reminding us all of the resilience that brings hope to the darkest moments and the love that inspired their caregiving in the first place.